Showing 51 - 60 of 523 annotations tagged with the keyword "Disability"
Summary:Black Bag Moon is a collection (one is tempted to say a "mixed black bag") of short stories (but not clearly "short fictions" - clarified below) about medical patients. The reputed authors are identified as these patients' physicians, who recount these stories in first person. By my math, there are nine authors who narrate stories about 37 patients in 29 chapters. Most chapters have two patients in unrelated stories that sometimes share a theme. Several of the authors know each other as colleagues and two are a married medical couple. Most of the stories occur in Australia or New Zealand but some are in places are as far flung as England, Scotland and unidentified, possibly fictional, islands in the South Pacific. The practitioners are, for the most part, family physicians and care for people of all ages, providing care for everything from breast masses to congestive heart failure to trauma to occupational health to - almost overwhelmingly - mental illness threatening severe violence. The last - serious mental illness - is, as are all the patients and their illnesses in this volume, almost exotically different from anything most readers of this database are likely to encounter as health care providers or readers. Think Crocodile Dundee or perhaps television's Dr. Quinn or ‘Doc' Adams of Gunsmoke. Or all the above but in the late 20th Century Outback.
At five years old, Willow O’Keefe has lived a life rich in love and exceptional learning; she reads beyond her years and has memorized a startling compendium of unusual facts. She has also sustained over 50 broken bones, two of them in utero. She has osteogenesis imperfecta, a congenital defect in the body’s production of type 1 collagen that leaves bones very brittle. People with the disease generally suffer many fractures and often other conditions—exceptionally small stature, hearing loss, and bowed limbs. Willow’s parents and older sister have organized their lives for five years around protecting her from damage and helping her heal from her many broken bones. Though Amelia, her older sister, loves Willow, her parents’, Charlotte and Sean’s, intense focus on Willow’s condition often leaves her jealous and disgruntled. Things go from bad to worse when their mother learns that a lawsuit for “wrongful birth” is legal in New Hampshire, and could bring them the money they need to cover Willow’s many medical expenses. Such a step, however, means losing a best friend, since the obstetrician who oversaw Charlotte’s pregnancy and Willow’s birth, and who ostensibly overlooked signs of the disease and failed to warn the parents, has been Charlotte’s best friend for years. A “wrongful birth” suit is based on the claim that medical information about a congenital defect was withheld that might have been grounds for a decision to abort the pregnancy. Though Charlotte insists this drastic step is the best thing they can do to insure a secure future for Willow, Sean finds it repugnant enough finally to leave home. It is clear that even a win will be a pyrrhic victory, and indeed, the outcome is ambiguous, costly, and life-changing for everyone concerned.
This collection of 16 short stories focuses on doctors and patients in San Francisco, where a wide variety of wealth and culture impact the delivery of medical care. Further, there are many restrictions—financial, bureaucratic, ethical, and legal —that limit what doctors can do, especially in cases of patients near death.
The author, Louise Aronson, is a geriatrician who knows this terrain very well, having trained in San Francisco and worked as a physician there. A skilled writer and close observer, she has created dramatic and often funny stories that reveal social and bioethical complexity. About half the stories describe end-of-life issues for the aged and the dilemmas for their physicians and families.
In ‘The Promise,” Dr. Westphall orders comfort care only for an elderly patient who has suffered a massive stroke, but a hospital gives full treatment because there was no advance directive and the daughter told the attending to do “what he thought best.”
When Dr. Westphall sees this barely functioning patient in a skilled nursing facility seven months later, he tenderly washes her face and hair—although the text teases us that he might have been prepared to kill her.
In “Giving Good Death,” a doctor is in jail charged with murder; he has fulfilled the request of Consuela, a Parkinson’s patient, to help her die. When it appears that she may have died for other reasons, he is released, his life “ruined.” He leaves San Francisco, and, we surmise, medicine. In three other stories, doctors also leave the profession: the cumulative stresses of work and family and/or a sense that it’s not the right path bring them to that choice.
On the other hand, one of the longer pieces “Becoming a Doctor” celebrates the profession, despite all the rigors of training including sexism against women.
The stories bring multicultural insights; we read of people from China, Cambodia, Latin America, India, Russia, and the Philippines. Some are African-American; some Jewish, some gay. These different backgrounds color notions of health, death, and medical care. There are also pervasive issues of poverty and, at another extreme, professionalism that is hyper-rational and heartless.
Indeed, a recurring theme is care and love for people, no matter their background or current health status. A surgeon realizes (regrettably too late) that the secret of medical care is “caring for the patient—for anyone—just a little. Enough, but not too much” (p. 135).
Summary:This book describes San Francisco’s Laguna Honda Hospital, where Victoria Sweet worked as a doctor for 20 years. In the tradition of the Hôtel-Dieu in Paris (literally “God’s Hotel”), Laguna Honda cares for the sickest and poorest patients, many staying there indefinitely because there is no alternative for them. Sweet learns from her long experience at Laguna Honda that “Slow Medicine” has benefits, that a holistic or unified view of patients works best, and that the reductionism and specialization of modern medicine has limitations and costs. During these years Sweet becomes fascinated by the medieval abbess Hildegard of Bingen and earns a Ph.D. focusing on medieval medicine. At the same time (and increasingly) various forces—economic, legal, political, bureaucratic—cause many changes at Laguna Honda, mostly contrary to Sweet’s vision of medicine.
Part history, part memoir, part social criticism, the book is informative, entertaining, and important for its discussion of the care of our least-well-off citizens and for its perspectives on modern, Western medicine.
There are three intertwining strands to this engaging book: Sweet’s medical evolution as a physician, the changes in Laguna Honda, and her investigations of Hildegard of Bingen and other spiritual matters.
Sweet joins up with Laguna Honda initially for only two months, but she finds the hospital and her work there so fascinating that she stays for 20 years. As an almshouse, Laguna Honda takes care of indigent patients, most with complicated medical conditions, including mental illness and dependencies on alcohol and/or drugs. Many of these cases come from the County Hospital with continuing (but not carefully reviewed) drug treatments. Every 15 or 20 pages, Sweet describes the dilemmas of a particular patient, and her medical (and personal) attention to that patient. The cases are vivid and instructive.
Clearly Laguna Honda is a major figure on the book; we can even consider it (or “her”) a beloved character and a teacher to the young Dr. Sweet, who learns three principles from her work there: hospitality, community, and charity.
Because Laguna Honda is old-fashioned in many ways, Sweet reads her own X-rays, goes the to lab to see results, and spends large amounts of time with each patient. Laguna Honda has an aviary, a farm with barnyard, and a solarium; such features help to heal the whole person. While respectful of modern medicine, Sweet slowly learns that a careful review of a patient through Slow Medicine is more accurate and more cost-efficient than standard, reductionist, high-tech medicine. She comes to respect approaches from “premodern” medicine, including that of Hippocrates and Hildegard.
The second strand is the evolution of Laguna Honda itself. Sweet describes a variety of pressures: the recommendations of consulting firms, rulings from the Department of Justice, a lawsuit, financial difficulties (including fiscal mismanagement), administrators focused on a narrow concept of efficiency, a utilization review board, forms and more forms, and a pervasive sense that modern (including Evidence Based Medicine) is always good. All these and more create a “relentless pressure squeezing the hospital’s Old Medicine into the New Health Care” (p. 322). Sweet demonstrates that her Slow Medicine can actually save money in the long run. Confident that her way is better, she proposes an “ecomedicine unit” that she would match against the modern, “efficient” units in a two-year experiment. (For more information on her concept of ecomedicine proposal, see http://www.victoriasweet.com/.)
As the hospital is “modernized,” many important features of the old place are gone and many “new and improved” aspects don’t work. Somehow there are no rooms for physicians in the new building while there is plenty of space for administrators and managers. A sophisticated computer system doesn’t work. Sweet doesn’t say “I told you so” directly, but we get the picture.
The third strand is Sweet’s investigations of spirituality and pilgrimage. She is fascinated by Hildegard’s notions of the healing power of nature, the ability of the body to heal itself, and wholeness as an aim for a person and for a community. Sweet attends a Swiss conference on Hildegard. She hikes the pilgrimage route from France to Santiago de Compostela in four installments and considers notions of pilgrimage. She feels called to pursue her ecomedicine project and to write this book.
By the end of the book, both Sweet and Laguna Honda have changed and are now headed in different directions.
Summary:Entering a school as the first student with a serious disability (cerebral palsy) after starting his education in a "special" school, Christopher Nolan had to develop careful and clever strategies for developing friendships, allowing others their curiosity, and finding ways to use his considerable gifts against the odds of both the disease and the prejudice it bred. One of his strategies is the inventive, cryptic, poetic, Joycean idiom in which he writes his story. He did, in fact, succeed in a school where he was accepted as a kind of experiment, in an area of Ireland not known for its progressive attitudes. In this narrative he moves back and forth between inner life, family life, and life at school, allowing readers to get to know him as a deeply reflective, adventurously social, and courageous human being, living with his debilitating condition with a degree of consciousness that took full account of the losses as well as finding avenues of expression that allowed him, intellectually, at least, full range of motion. The narrative takes us through his school years where he distinguished himself as a poet and also as a human being for whom life with a disability shaped an extraordinary dexterity with language.
Summary:Emily Bauer, mother of two small children, psychotherapist and teacher, social, smart, athletic, and strong-willed, finds, after a curious series of falls and other accidents, that she has ALS, "Lou Gehrig's Disease," a disease that involves slow atrophy of all muscular control, leading to complete paralysis and then death. The disease is relentless, and treatments palliative at best.
Summary:Eric Calhoune is known to his classmates as "Moby" because of the extra weight he has carried since grade school. Though his mother is young and athletic, he has inherited the body type of the father he's never known. Now, in high school, the fat is turning to muscle under the discipline of hard swim team workouts. But that transformation has been slow in coming, since for some time Eric has taken on a private commitment to "stay fat for Sarah Byrnes." Sarah, whose name is a painful pun, was severely burned as a small child not, as we are given to believe early on, because of an accident, but because of a cruel and crazy father who stuck her face and hands into a woodstove in a moment of rage. She has lived with him and his threats for some time; that and her disfiguring scars have made her tough, smart, and self-protective. Eric and she became friends as social outcasts. Well-matched intellectually and in their subversive wit, they write an underground newspaper together. Sarah, however, lands suddenly in the hospital, speaking to no one, making eye contact with no one. Eric faithfully visits her and, per nurses' instructions, keeps up a running one-sided conversation as if she could hear him. As it turns out, she can. She is faking catatonia because the hospital is a safe place, and she has chosen this as an escape route from her father. Eric and a sympathetic coach/teacher go to great lengths to find Sarah's mother-who, it turns out, can't bring herself to be involved in her daughter's life because of her own overwhelming shame. Ultimately the father is apprehended, and Sarah, nearly eighteen, is taken into the coach's home and adopted for what remains of the childhood she bypassed long before. In the course of this main plot, other kids enter the story and in various ways come to terms with serious issues in their own lives, some of which are aired in a "Contemporary American Thought" course where no controversy is taboo.
Summary:This remarkable memoir/natural history chronicles the author's observation of a snail that occupies the flower pot at her bedside during a long immobilization due to chronic fatigue syndrome. For months of relative isolation, she observes the habits of the snail and begins to research the lives, habits, species, and idiosyncrasies of snails by way of getting to know this one in greater specificity. As she puts it, "When the body is rendered useless, the mind still runs like a bloodhound...," (p. 5) and her mind certainly does. Peering into poetry and story as well as biology, she discovers both facts and lore about the lives of snails to complement her intimate curiosity about the life of this snail. Along the way, and very much by the way, she reflects on the nature of her own complex illness, the likely brevity of life she has now to expect, and how to learn from another species how to live in time differently.
Summary:Adam, nine and diagnosed with autism spectrum disorder, wanders into the woods outside his schoolyard with a new friend, Amelia, who is ten and diagnosed with pervasive developmental disorder. Worried parents and teachers wait until the police discover Amelia's body with a stab wound and retrieve Adam unharmed. Adam, unable to communicate very directly with anyone, inadvertently provides key clues to solve the mystery, which involves an old friend of his mother's, confined to a wheelchair since an accident he suffered in elementary school. In the course of recovering from the trauma the whole community is changed, and Adam finds a new friend who will very likely be able to cross bridges into his world and accompany him on his mysterious journey for a long time to come.
Summary:Jacob, a teen with Asperger's syndrome, has long been obsessed with the details of crime scenes and crime detection. He tends to show up when local crimes are reported, and is sometimes able to offer unnerving insights to forensic analysts. He works closely with an empathetic, intuitive young woman tutor whose controlling boyfriend has more than once tried to taunt Jacob out of her life, but she and Jacob have a strong, healthy connection that ridicule can't touch. When she is found murdered, Jacob becomes a suspect, partly because of his proximity to the crime, and partly because the symptoms of Asperger's-avoiding eye contact, twitching, and hesitant or repetitive speech-resemble guilty behavior. Though he has valuable information to offer as to who actually committed the crime, the process of making himself heard by those disinclined to take him seriously and uninformed about his syndrome, takes time, during which the disrupted lives of those around Jacob, especially his mother, become stories in their own right.